Monday, November 30, 2009

I love all the decorations that come with Christmas. We've already got our outside lights put up and the inside is decorated as well. All we need is a tree. Taylor likes looking at all the lights. She also loves anything that lights up and plays music. We have Christmas decoration with Elmo, Cookie Monster, and Oscar the Grouch sitting on a sled. When you squeeze Elmo's hand, they sing and move.

Last Christmas it was a nightmare trying to get Taylor to leave it alone. Every time you turned around, she had grabbed it and ran in her room with it. I'm guessing she remembers that it's for the living room this year because when I got it out, she actually asked if she could take it in her room. When I told her no, she seemed okay with that.

Of course, the first night it was out, she had to come out of her room 10 times to go to the bathroom because she got to walk right past it. She looked at it each time but didn't bother it, so it's an improvement. Today when she came home from school, she made it sing a couple of times and seemed happy with that. We have a little tree and she stuck it on her dresser, so I plugged it in and she fell asleep with it lit up.

We have no idea what we are going to get her for Christmas this year. It's not like she can tell me what she wants and she has all the toys she likes to play with. I think I would like to get her new bedding and redo her room. Maybe I can do that for her for Christmas. We will get the usual things for her stocking…car magazines, bubble bath (can't have a bath without bubbles"), and a few other little things.

I had to reschedule Taylor's cardiology appointment. She had been sick over the weekend and I didn't want to drag her off to the hospital right now. This is proving to be a bad winter for Taylor. Last year was a good one and the one before was a bad one, so I guess we are keeping with the normal pattern.

Tuesday, November 24, 2009

To say that I'm not religious would be an understatement. However, I do believe in God. When Taylor was born I was attending the church of her father (my ex-husband now) and it was a fundamentalist, Pentecostal church. While I was going through everything with Taylor, I had several members of the church tell me that I wasn't praying hard enough or didn't have enough faith and that was why Taylor wasn't "made whole & normal". Thankfully, the majority of the people were not like that, but those few are what started my questioning of the whole religious thing.

I came across this poem on someone's blog and saved it awhile ago. Today, I thought I would post it here because regardless of what you believe, I think it touches "something" inside. Yes, it made me cry but then anything like this usually does. Taylor is eternal innocence and I just wanted to share.

"As a small group of political and church leaders look on,

Jesus lifts a mentally handicapped child out of her chair kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?

I could do it; but I will not.

I am the Lord and not a conjurer.

I gave this mite a gift I denied all of you -- eternal innocence.

To you she looks imperfect

But to me she is flawless,

Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the work of {my} hands.

She is necessary to you.

She will evoke the kindness that will keep you human.

Her infirmity will prompt you to gratitude for your own good fortune...More!

She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

Thursday, November 19, 2009

Today was Taylor's echocardiogram and I will admit to wanting to know how her valve looks. However, I couldn't really tell you why I thought I would find something out today. The Bossman would just laugh and say something sarcastic about my brain…or lack thereof.

Anyway, the technicians never tell you anything. I think they take a class specifically on how to not change their demeanor no matter what they see. I now have to wait 10 days until Taylor sees her cardiologist on the 30th.

I think I'm just a little anxious because there are some changes going on with Taylor that no one can seem to come up with a reason for. She has some discolorations of her fingers and toes but Taylor doesn't have great circulation to begin with so it could be totally unrelated to her heart. Her left foot has been swollen for over a year and no one can figure out why. At first they thought gout. Gout? In an 18 year old…obviously that wasn't it. They've take x-rays and now the swelling is moving up past her ankle. She takes her shoes off the minute she gets home. I've been lucky enough to have a couple of pair of low-top converse for her…they seem to stretch.

I have no clue if all these other symptoms going on have anything to do with her heart. I honestly hope they aren't. Of course, that means starting from scratch to see what else is going on. Part of me wonders if it even matters anymore. If it's a matter of life and death, absolutely I'll make the decisions that need to be made. I just don't want to put her through things that won't help.

Taylor is a very happy, affectionate, loving, "little girl". I want her to spend her time doing those things that she enjoys…that's what gives Taylor her good quality of life.

So now the 10 wait commences. Thanks to all my friends for their good thoughts today.

Tuesday, November 17, 2009

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.

Monday, November 16, 2009

Has it only been 3 days since I last posted? It feels like a month. Today has been the first day Taylor has been fever free, so it looks like she will be able to go back to school tomorrow. It's been a rough week. Taylor just doesn't do well when she is sick. She doesn't understand taking it easy and she would rather go to school, sick or not.

The Bossman has been sick for over a week as well and I thought it was going to bypass me, but apparently not. I have really bad asthma and last night at around 10 or so, I could feel one coming on. I did the inhaler & nebulizer stuff but it just wasn't helping. Once I start coughing, I can't seem to stop. I have been hospitalized several times for my asthma. I usually have a good experience as far as any ER experience can be good.

However last night was not a good experience. I actually had the doctor tell me to try chewing gum to stop coughing. Yes, really…gum. We got the wheezing under control by several nebulizer treatments using a stronger medicine than I have at home. As far as my coughing goes, not so much. I have Delsym at home and sometimes it will help but not so much last night. In case you didn't know, Delsym is an over the counter cough syrup consisting of nothing other than dextromethrophan …you know…the same stuff in Robitussin. The only difference is that the Delsym is in a suspension form. It's supposed to make it last longer. Now this doctor tried to tell me that Delsym is a narcotic. Seriously? What narcotic can you buy over the counter at Wal-Mart. When I mentioned it's an otc, he said, "well, it tricks your brain into thinking it's a narcotic". Yeah, okay…whatever. I swear, he made me feel like I was a drug-seeking fiend. All I wanted was to stop coughing. Every nurse that came in the room kept telling me that my cough was making their chest hurt. Imagine how it made mine.

I suppose I'm done ranting. I'm feeling like crap today, but I'm hoping it's a quickie sickness and not some drawn out flu or anything. I don't have time for that. Taylor has her echocardiogram on Thursday and then her cardiology appointment in 2 weeks. Hopefully her aortic stenosis will not have advanced any farther. I am just not ready to be making valve replacement surgery decisions.

I have many blogs to catch up on and hopefully my internet friends will understand my absence. I have just been too busy and/or tired to sit at the computer any longer than I have to. Right now, I'm enjoying listening to this wild wind that is blowing outside. We've had gusts up to 25 – 30 miles per hour. I love the wind, so I'm going to go snuggle on the couch, watch TV and listen to the wind.

Friday, November 13, 2009

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes it is 2am on Friday morning and I'm sitting up because I'm scared to go to sleep. Taylor's fever is 103.5 right now and she is very "out of it". I know she is the one that is sick. She is the one that has to deal with feeling bad, but right now, I'm just very tired.

Yes I am having a moment of feeling sorry for myself. At least that's what I think I'm feeling. Right now, at this very moment, I wish I had a "normal" child. I wish I had a child who could tell me exactly how she is feeling. I wish I had a child that didn't have seizures. I wish I could trade the worries I have right now with the worries of…is she passing her college classes, do I like the boy she is dating, is she practicing safe sex.

My "Yes I Did Friday" post is just one big old poor me post and I apologize ahead of time to everyone. Maybe it's the lateness of the hour, or earliness depending on your perspective. Maybe it's that I'm tired and I just wanted to sleep in my own bed and not the lumpy couch that always sucks my butt in between the 2 cushions, forcing me into a V shape.

Yes I Did force you, my fellow readers to participate in my surprise pity party. Awww…screw it. I'm done already. I've given Taylor some medicine and I'm going to go do some mindless infomercial surfing, unless I get lucky and find an interesting show to watch in the middle of the Snuggie and Obama Chia Pet commercials.

Thank you for letting me vent and get it all out of my system. I promise I only have moments of self pity and I try to make them few and far between.

Tuesday, November 10, 2009

I'm going to whine for a few minutes. Well, maybe it isn't whining as much as it is complaining. Yesterday was a rough seizure day for Taylor. Okay, I can handle that. That is nothing new for us. A good seizure day is less than 50 a day, so seizure free isn't in our vocabulary.

Anyway, Taylor wakes up at 3 am coughing with a temperature of 101.5. Fine…I can tell this is going to be a rough winter. Taylor alternates. We have good winters and bad ones. This is shaping up to be a rough one. I'm assuming it can't be the flu because we've already been there, done that a few months ago.

I take her to the doctor and he says…she has the flu. What? I mention that he diagnosed her with the H1N1 flu back in September. Now, don't get me wrong, I love our doctor. He does the best he can with Taylor and that's all I can ask for. The Trisomy 9p throws most of the doctors off. However, I'm expecting him to come up with something other than the flu…a cold maybe? He says to me, well, she either had the flu back in September and she doesn't now or she has the flu now and she didn't back in September. Yeah…I'm guessing your faces are probably looking like mine did.

We are treating her for the flu again. But guess what? The insurance won't pay for the Tamiflu because she's already had the flu and so she shouldn't need Tamilflu again. Whatever. I'm just going to treat her symptoms and see if she gets better. If she doesn't, then we'll know she needs something else.

On a side note, Taylor was born with a heart defect. She had a VSD but luckily it closed on its own when she was 6 months old. She also has a bicuspid aortic valve with aortic stenosis. Now this defect ended up being the least of her issues but as she has gotten older it's starting to cause some problems. Her doctor did notice her fingertips were a little blue and her lips were not pink…but they weren't blue either. They were sort of in-between.

I told the doctor that she has an echo cardiogram in a couple of weeks and she sees the cardiologist on November 30th. To be honest, the doctors told us that Taylor wouldn't live long enough for her heart valve to become an issue. Well…she decided to prove them wrong and now that she is 20, it looks like a valve replacement will be in her future…again, if she hangs around for awhile longer.

Taylor is stubborn and she is having way too much fun in her life and I can just see her giving the finger to all those doctors that tried to write her off. I sometimes think she wishes she could just say a big "F**K YOU" to all those people that said she would never see her 1st birthday. I love that girl more than I could ever find the words for.

Monday, November 9, 2009

I got my first blog award. Thanks Jennifer. I know that I blog as a way to vent and I do hope that what I write can be of help to others but I will admit that there is also a part of me that likes it when I know people are reading my blog. I like to get comments. While that isn't the sole purpose of blogging, I would be lying if I said I could care less whether anyone comments…I do.

Today has been a rough day here. Taylor has been on the new seizure med Banzel since Thursday night. I know that it hasn't had a chance to build up in her system but I sure hope it will hurry up and help. The school called today and I had to go pick Taylor up. She was seizing too much for them to handle. Taylor had over 40 seizures in 20 minutes. The teacher/aides are very good about writing down every seizure and the time and the poor lady was carrying around a piece of paper trying to keep track.

She came home and has been seizing like crazy. She's had some serious drop seizures. There's a second nature to Taylor. I think she has an aura or something because she'll be standing there and then all of a sudden reach for the wall/chair/person…whatever she can grab to hold on to a second before she would have fallen due to a seizure.

Probably 3 – 4 years ago, I would have packed her off to the ER for IV Ativan to try and slow down her seizure activity. Now, I just don't see the need. Her seizures are uncontrolled…I know that. I just don't want to fill up her time with short acting medicines and needles (even if she does have a port).

Sometimes I feel like I've given up on her. Sometimes I second guess my decisions and wonder if I'm doing what's best for her. I hate those feelings. I feel that I'm making the best decisions I know how to make for Taylor but I guess only time will tell if I've chosen correctly or wisely.

There are no absolutes when it comes to treatment for Taylor. I just know she is much happier throwing her toys into the bathtub than she would be, in the hospital, hooked up to an IV being pumped full of a barbiturate.

Sunday, November 8, 2009

I couldn't sleep tonight, so I started watching a documentary about the Berlin Wall. Watching it brought back an interesting memory. It's funny now to look back at but I can assure you, at the time, it was anything but funny.

I grew up an Army brat. I was actually born in Stuttgart, Germany. We came back to the states when I was less than a year old. That was 1963. Thirteen years later, my dad was once again stationed in Germany. This time, we were in Heidelberg. My dad was part of the 207th Aviation Company. He was an Army pilot.

I loved being in Germany as a teenager. We traveled all over Europe. We went to England, France, Belgium, Italy, Switzerland, Austria, and even the tiny country of Liechtenstein. Since I've already dated myself, I can share that when I was living in Heidelberg, Germany was divided in 2. We decided to take a family trip to Berlin. Now if you know your history, you know that Berlin was divided in 2 and the entire city was located in the middle of East Germany.

To get there, we had to get special passports and rode what was called the troop train. Once we passed from the West into the East, we had to stop at every station for the East German or Russian soldiers to board the train and check our passports. They also had mirrors on long poles that they would slide under the train to see if anyone was holding on to the bottom of the train, trying to escape to the West. My brother and I had our own little room on the train because this was an overnight ride. It was great fun.

So, we get to Berlin. It was my dad, mom, a close family friend we always called Uncle Dave, my brother, and me. Uncle Dave wanted to go into East Berlin. Because of my dad's job, he wasn't allowed to go, so he and my brother spent the day at the Berlin Zoo. That left Uncle Dave, my mom, and me to go into East Berlin.

Something to know about is the money exchange. In West Berlin, you could get 4 East German marks for 1 West German mark while it was 1 for 1 in East Germany. Keep in mind; you weren't supposed to bring any money across the border. You were supposed to exchange it once you crossed into the East. However, I guess we wanted to be greedy and have more money to spend. Now you have to remember that I was only 14 years old and this was 1977 when 14 was still a child.

We exchange the money and I put it in the bottom of my sock and slip my shoes on. We head through Check Point Charlie. Once we get to the East German side, we walk into a building and my face turns completely white. In this building are several dressing rooms. I've now become terrified that I am going to be strip searched, they are going to find the money in my shoe, and I'm going to be carted off to a Russian prison. My mother grabs my hand because I'm starting to hyperventilate. The reality is that these used to be dressing rooms from back in the late 40's early 50's. I let out a huge sigh.

There are some interesting stories that I would love to share from inside East Germany, but this post is getting long, so I'll have to do a part II to this story. Needless to say we didn't want to smuggle the money back through and the only thing we could do with it is eat because anything we bought would have to match up with the exchange receipts we supposedly had from the East German bank. Yeah, that isn't as easy to do as it seems. We ended up tipping the bathroom attendant lady insane amounts.

When it was time for us to come back to West Berlin, we went through the building, handing each East German soldier at various windows our passports. Uncle Dave handed a soldier his passport, the soldier looked at it then sent him out of the building back towards Check Point Charlie. My mother went next but she stopped at the door, waiting for me. The soldier took my passport, but he wouldn't give it back. He put it to the side and started fiddling with his stool. My mother is still standing there and the soldier notices her and tells her she has to leave. She tries to explain to him that I am her daughter and she is waiting on me. He just says, "No you must go".

I get scared and start to tear up, thinking the soldier has just misunderstood. The soldier, my mom, and I were the only ones in the building. He walks out from behind the counter and "gently" pushes my mother out the door. That leaves me in there alone with him. He goes back around and starts working on his stool. I have no clue what was wrong with it, but he had it upside down, checking the legs and other stuff. By this time, I have definite tears rolling down my cheeks. I'm petrified, wondering what in the hell could possibly be going on. After about 20 minutes, which seemed like hours, a Russian soldier walks in, says something to the East German soldier. It didn't sound very nice. So they hand me my passport, the Russian soldier smiles at me, grabs my hand, and walks me out the door and up to the American soldiers at the check point. My mother is almost in hysterics by this time. She keeps asking me what happened. All I can tell her is "nothing".

At the time, I thought I was going to be traumatized for the rest of my life by that experience. In reality, it's become a really neat story to tell but you could never have convinced me of that back then. According to my dad, he found out that the East German soldiers just liked to harass American tourists and it was just my turn.

I hope you enjoyed my little story and I'm sorry that it turned out to be so long. I'll have to share the rest of it sometime.

Thursday, November 5, 2009

Today was Taylor's appointment with the neurologist. That's nothing new. We've gone through 15 neurologists in 20 years. Only 2 of them were because we didn't like them. One of the ones that we kicked to the curb had the gall to tell me that at 5'7'' and 105 lbs, Taylor needed to lose weight. I think I stood there for a few minutes dumbfounded. What the hell? I'll have to share that story sometime.

We decided to start Taylor on the new seizure drug Banzel (rufinamide). This will be on top of the other 3 drugs she takes: Keppra, Zonisamide, & Clonopin. This drug was specifically made for the condition Taylor has, Lennox-Gastaut. She has started having drop seizures again and I'm hoping to stop those. The absence & complex partial seizures are bad enough without adding those. Before her brain surgery, the drop seizures caused a broken leg, several broken noses, a huge blood clot in her butt from falling backwards that had to be surgically(350cc's of blood removed + a drain for 7 days) removed, and other countless bruises and scrapes.

I was talking to the neuro today about Taylor losing some of her milestones. She is a sweet women and an awesome doctor. She genuinely loves Taylor. Anyway, she was telling me that for some MRDD patients, she thinks that it was just their time to lose some abilities…especially when she can't pinpoint another reason. However, with Taylor, she knows for sure that it's the seizures that are causing her to regress.

She said to me, "Taylor is living on precious time & she is writing her own pages". That sentence touched my heart. The combination of Taylor's medical issues is unique. The Trisomy 9p is rare not to mention that she was born with unrelated birth defects involving her brain, kidneys, & stomach. So yes, Taylor is writing her own pages in a medical journal, but I think there can be so much more to that statement.

Taylor is writing her own pages in this world. She is leaving her mark in her family's hearts & I haven't met many people who aren't touched by Taylor's sweetness. I do know that Taylor is living on precious (borrowed) time. Having the neurologist say it does make my heart skip a beat but I'm not going to start paddling down that river of denial now. I know that nothing will ever prepare me for the loss of my Taytiebug. I'm just going to enjoy each & every day of her precious time here on earth & keep hoping that she has much more precious time with us.

Monday, November 2, 2009

Today was Taylor's port flush. She has it down at the infusion center in our local hospital. With the H1N1 flu going around, they have instituted some severe restrictions when entering the hospital.

No one under the age of 12 is allowed in the hospital at all unless they are the one being treated or tested. No one under the age of 18 is allowed in the Maternity area. When you enter the doors of the hospital, you are greeted by the "Sanitizing Police". (Please note my restraint in not calling them "Sanitizing Nazis".) You are required to hold your hands out for them to squirt sanitizing foam into.

Because Taylor was the "patient", I had to wear a name tag with the date of the visit written on it. Now, I'm not knocking these precautions in any way. I understand in keeping people as unaffected by this flu virus as possible. It was just a sudden shift as I was just at the hospital a few days ago.

The Bossman was nice enough to download my Halloween videos off of the camera and so I'm going to share one of Taylor, the cow, and a seizure. I missed the beginning of the seizure, but I think I caught enough of the one we call "the elvis" to give you an idea. She can have as many as a few hundred+ of these a day. It's funny how as soon as the seizure is done, she "says" something. We may not know what she is saying, but it's definitely something. The Bossman wonders if it is actually part of the seizure itself or if it's a coping mechanism for her.

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About Me

I am the mother of a daughter with Trisomy 9p & Lennox-Gastaut seizure disorder. There is a lot to deal with when you have a special needs child & I thought it would be a good idea to share my travels here.